M.E. awareness month

The month of May is “ME Awareness Month”, with May 12th being the particular day, and I have also seen the week starting May 11th designated as ME awareness week.

ME is classified by the World Health Organisation as a neurologically-based disease. It is of unknown cause, although there are several theories including viral and environmental agents. There is no known cure.

Unfortunately, in the UK the NHS seems to have ignored the WHO’s classification of ME as a specifically neurological illness, and has lumped ME together with any and all unexplained tiredness and fatigue, which can in fact be caused by a number of things, including Lyme Disease, Lupus, vitamin B12 deficiency and Pernicious Anaemia, Thyroid and adrenal problems, Sjögren’s, PCOS and other endocrine diseases, MS, fibromyalgia, depression and more, and has called the whole collection CFS, MEcfs or cfsME.

Within the umbrella of CFS there is obviously a vast spectrum of symptoms which range in severity, from those who are experiencing a mild loss of ‘get up and go’ to those who are in constant pain and utterly bedbound and unable to care for themselves, and since it is an umbrella term, treatments that may be helpful for mild types of CFS, such as GET – graded exercise and CBT – cognitive behavioural therapy, are wholly inappropriate and can be harmful for those who actually have ME.

CBT can be useful for people not coping well with any long term chronic illness but should not be touted as a main treatment for ME in the way that it is, based on the faulty assumption that CFS is inevitably linked to caused by psychological factors, and GET is harmful to PWME who have the key symptom of Post exertional malaise.

This situation has been exacerbated by the psychiatric establishment which has greedily claimed all ‘CFS’ patients as their own, baselessly alleging that all CFS must be related to mental and emotional factors.

Thus the tendency is to treat all CFS patients as though they are all suffering from an unexplained, probably psychologically-based, rather than neurologically-based illness, regardless of the severity, and further to fail to investigate thoroughly or adequately in order to rule out any other cause (such as those listed above).

There is no definitive test for ME yet (largely because genuine research has been so scarce), and so ME should never be diagnosed until every other possible cause has been eliminated.

The classification of ME together with any unexplained CFS is a nonsense which means that people who actually have curable and treatable diseases aren’t getting the help they could and should be able to expect, while those with ME are simply treated with disdain instead of receiving the palliative care they need.

This is a wholly unacceptable situation for everybody involved, which helps no-one, except those few outspoken psychiatrists who like to gain notoriety by making the psychological case and denying the reality of the suffering.

A friend has also pointed out that MS, asthma, duodenal ulcers and other illnesses were all considered psychiatric problems before biomedical caught up.

Thanks to “life for beginners” for the reminder and the post.

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2 responses to this post.

  1. Reblogged this on oopster74 and commented:
    ME sucks ass, and people believe you when tell them the symptoms, but as soon as you say it’s ME, you get treated like you’re making it up. Thankfully (or not), I got a diagnosis of diabetes, which they know how to treat. I still have a diagnosis of ME, but my issues could be diabetes related instead, but, I was prescribed anti depressants for a lack of energy, which did help for a while, so maybe this could help? Treat ME like a physical depression, rather than a mental depression.

    Reply

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